CURRENT WEIGHT: 19 lbs, 7 ounces
CURRENT LENGTH: 31.5 inches
We saw Truman's GI specialist, Dr. Barth, at Children's this morning. He was actually pleased with Truman's growth because he moved up a little on the weight-for-height chart. That one doesn't have a relationship to age that I'm aware of, so Truman's is in the 3rd percentile on weight for a 31-inch kid -- not fat by any means, but not skin and bones either. Truman's weight this morning (which is probably more accurate than yesterday's after a 6-ounce bottle) was 19 lbs, 7 ounces.
He determined not to an endoscopy because he the only things that might be found are some allergies, which he pegs at maybe a 10% chance, but it's still in the bag of tricks for later if needed. We made some tweaks to the medication. We're doubling the Erithromycin to see if it has any effect since the current dose doesn't seem to be. We're also doubling the Prevacid to the maximum dose for his weight and administering it both morning and night since it does seem to have some positive effect.
He very much agreed with the recommendation for in-patient therapy at Our Children's House. He said the program works wonders and is one of the best in the country. He also said we need to consider it sooner rather than later because there's a window in which texture aversion issues can effectively be dealt with without becoming a potentially life-long problem. However, he said we should discuss the timing more with his therapists because they will be better able to gauge whether we can wait 6 months to see if outpatient texture therapy works. If Truman's pediatrician, Dr. Suterwala, agrees at our appointment next week, I think we will probably start the process for at least getting insurance approval and Truman scheduled for in-patient therapy sometime early next year.
Dr. Barth again suggested we consider a feeding tube to give Truman some extra help overnight. We still want to avoid it if possible, and Dr. Barth said that Truman is not a critical point. If he were, Dr. Barth said they would have admitted him then and put one in today.
One thing he said that really reassured me in this whole process was when I asked whether his slow growth was affecting his developmental and cognitive growth. He said not at all because Truman does have some fat on him and is growing. He even took off his diaper to check that he has butt cheeks and to demonstrate to us one measure of fat on a kid. Dr. Barth said weight and height suffer before the brain does from malnourishment. He said he would let us know well before that point and basically said that the hospital might overrule us anyway if Truman was at that point and we opposed a feeding tube.
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Have you guys tried reglan for Truman (I forget now)? Erythromycin didn't help Hallie's DGE but reglan did (and doesn't have the scary neurological side effects for her). We were pretty worried about this but in the end it was okay.
We're also worried about texture and losing that window of opportunity for teaching Hallie how to handle it. Our last attempt at feeding therapy was awful, to put it mildly, and the therapist was totally disrespectful of Hallie's allergies, which made everything worse. And we've made a bit of progress on the texture at home, giving her boiled and mashed prunes in addition to and increasingly instead of baby food stage 2 prunes and having her eat a bit of solid cheese (of the goat variety) and not too watery but somewhat smoother than right out of the container goat ricotta and chevre. But we are worried she'll never learn to eat "food" that is normal and we're not really sure what to do. The allergies definitely complicate things, but we wonder (mostly I wonder; Sharon is sort of in denial about this still) if we don't need a decent in-patient feeding therapy stay to really get a handle on this. Right now, with our preoccupation with the new baby and two full time jobs, we can't really do anything, but I'm thinking that maybe this summer might be our chance to make real progress. If only we can get a few more foods in our repertoire, we might have something to feed her, too!
Good luck with everything; I totally know how stressful this is but it does seem like things are heading in the right direction weight-wise for Truman and hopefully this will all improve some time soon.
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